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Saturday, April 28, 2012

I am sitting at school right now waiting for my next class to begin. I'm so glad this semester is almost over, because I can barely concentrate on anything but Kay. Ben and I are so overwhelmed with gratitude for all the support we have been receiving. I sat down last night to write out a few "Thank You" cards to recent donations that have been made to Kaylie's account. There was one anonymous donation that I am not able to send a "Thank You" to, so I wanted to take the time on here to tell who ever you may be... Thank You... your kind gesture is much appreciated. And this drawing is for you from Kaylie.

I also have to say "Thank You" to all the people that have been passing on Kaylie's information and/or website... we have had so many hits, and from all around the world! Of course mainly in the US, but also from South Africa, Japan, Germany, Russia, Denmark, United Kingdom, and Hong Kong. It makes us so happy, that the awareness of Chiari is being spread. And just maybe someone will read Kaylie's story, and it will help another child or adult out there that is suffering from similar symptoms, or illness.
I am trying to take a step back from some of the support groups online. It saddens me that there are so many parents that are very confused about whats going on with their child. I have noticed this more on the pediatric sites, more so than the adult ones. I am very fortunate that I am able to grasp how the medical field talks about all this, and know where and what they are talking about. Sometimes I wonder if its a downside to know these parts of the brain, or how certain lobes and nerves work. But maybe this is the reason of why I decided to go back to school awhile back, is to prepare me for this journey my family is taking. I keep telling myself that I could promise my career in nursing to neuro, if I could just have the guarantee that everything will be OK for her. But honestly, I think by the time I finish school.... I don't think I could deal with that specialty.
Kaylie has been on her Topamax for almost 4 days now. It is still too soon to see how it is working. It takes a couple weeks to get in her system. But, she has had a symptom that has been happening more frequently lately. She has been having more night time accidents, urine only. Easter morning, we did wake up to where she had lost her bowels over night. That has been the only time that has happened to us, even during all of our potty training days. But the urine accidents have always happened here and there, but they seem to be getting more frequent. This can happen with Chiari kids, or it can also be caused by a tethered spinal cord (which we won't find out if she has that till the next MRI). OR - which I'm hoping for could be that the Topamax is sedating her so much she isn't waking to get up to go. Unfortunately, the Topamax can cause a lot of same symptoms as Chiari. Still not going to add it to our list of symptoms yet, things need to be ruled out first.
Oh! I have had one or two people tell me they have joined the email list for this blog, to know when I have updated it, and that they aren't receiving emails for when I do. If you have put your email in the "Follow her by email box" (that is located on the right side column of this blog.. near the top), when you finish going through the steps, you will then be sent an email to verify, that you signed up for it. Its just an email that has a link in it to click on. I know for Ben his ended up in his spam folder... so you may have to check there....OR just sign up again, so the email will be sent again... then go check what folder it was sent to. All email updates are sent between 9-10pm, once a day.
Well, I better get to my class... keep spreading her site, because if we can at least make a difference for one person that may read this site... this blog has done it's job!!! Thanks for all the support! (((HUGS)))

Wednesday, April 25, 2012

I probably should have posted this post before the one
below. This morning I decided to get up really early and go run/walk… walking
more than running, I haven’t ran in awhile! It was the best feeling ever!! I
told myself, “Just go a few blocks, to get back into it”. Once I got going… I
didn’t want to go home! Stress releases a hormone called cortisol. Cortisol
olds fat in, so this is a reason why a lot of people gain weight under stress.
I have defiantly gained weight lately. I think my hormones are so out of wack! When
you run, walk or any exercise … everything comes out in your head. I felt so
many feeling come out. My head could not stop thinking. There were even times I
started crying, and then I would stop… then cry some more. I told Ben all this,
and he told me I should probably not do that while running, someone would think
I was running to get away from someone that hurt me! Lol Right now, I don’t
care what anyone thinks. It felt so good to feel the hitting of my foot on the
pavement, my heart racing, and my body trying to breathe so hard. Besides that
I need to start doing this on a regular basis, not only for my physical health
and mental health… I wanted to get back into this for Kaylie. There is a
run/walk in Tulsa Sept. 22, 2012 for Chiari. I have known about this run from
the day she was diagnosed. I told Ben I wanted all of us to run or walk in it. I’m
scared that we may not make it to it, because of the possibilities of her
having surgery. But I promised myself today, that even if she had surgery and
she was post-op ok to be out in about… we will still do it, even if I have to
pull her in a wagon!

I sit here finishing this post, as she sits beside me eating
vanilla pudding. Tonight is her first night with the Topamax. It comes in
sprinkles form for her. I open the capsule, and sprinkle out the small white
beads onto the pudding. She says she likes this one, because it looks cute, and
doesn’t taste bad. All I can think about, is how can something so small scare
me so much.

Just got a call from the neurologist office.... they made the appointment with OU Children's radiology department, and the soonest we can get in is June 1st, 7am check-in. YES! You don't have to tell me... I am asking the same thing....WTH??? Over a month! They gave me the number to the department... so I can call weekly about cancellations. I'm going to call them tomorrow around 6am... b/c our 1st MRI was scheduled at 2:30, but that morning they had called me at 7am... telling me they had a cancellation, and if I could make it in at 10am. So, I am hoping I call tomorrow morning early... any cancellation would be a ***miracle***(most likely not to happen)... but then I would just let them know to add me to the cancellation sheet, then I will start calling every week. Hopefully someone will cancel!
If not.... I guess we are waiting till June 1st! SUCKS!

So... I guess I can go ahead and let people know are dates for up north. July 23rd we have an appointment with Dr. Rekate at The Chiari Institute,...NY and on July 27th with Dr. Ben Carson at John Hopkins...Maryland. Luckily Ben's family is all in Pa, and both place are about 2.5 hours from family. We haven't decided on when we are leaving OK for up north yet.... Ben & I need to talk about all that first.
So, Everyone keep their fingers crossed for a MRI cancellation!!!

Tuesday, April 24, 2012

Where to begin??? We met with the neurologist. She is very
nice and very professional. She was a little puzzled as well, as to why the
radiologist had not measured Kaylie’s herniation. She asked if we had the MRI
CD, of course I did. She looked at it, and she measured the herniation to be
9.04mm. She said but that could be a little off… due to radiologist use special
computers to measure precisely. Like I have said before… measurement does not
matter. She was concerned about the crowding of the cerebellum & tonsils of
the brain and the spinal cord. There should be space between them, for spinal
fluid to flow. She did not say she was blocked, but there was hardly any space
in certain areas (because there is more than one area where spinal fluid
flows). Before I even asked…. She is scripting out the spinal MRI, besides the
fact of looking for a syrinx, but also for tethered cord. I asked if a CINE MRI
(measurement of spinal fluid flow) could also be done, she said she would look
to see if she can have it ordered. She says typically a neurosurgeon does them
a little before surgery. I do not have the appointments yet for the MRI, their
office will make the appointment, and then call us with the date/time. I know
they already know this, but I told them anyways… we will take first available
and it doesn’t matter day or time.

I asked her how many cases she had currently with Chiari
that are symptomatic (that means kids that have chiari, they were sent for MRI
because of symptoms happening…. Not accidently found, and present NO symptoms)
she has none with symptoms. She has treated 2-3 that have had
decompression surgery…. So meaning they probably had a surgery somewhere else, and
then came to her for continued care or it was during her intern years. I forgot
to ask when that was. I don’t know if she is still caring for them. I asked her
if something came up, if Kaylie needed surgery, who would she send us to. She
said OU Children’s. I then told her, that we would not be going there, we
already have appointments to see specialist in chiari at John Hopkins and The
Chiari Institute. And if she needs surgery we will have one of those places do
it.

She has also decided to take Kay off the periactin
medication. The medication was to prevent headaches from happening. Because she
still had headaches while on that medication for the past month, they are now
going to put her on Topamax , nightly. Topamax is generally used for seizures,
but can also be used in preventing headaches. It takes a couple weeks to kick
in.

So, this is where we are at…. Waiting for the appointments
of the next MRI.

Monday, April 23, 2012

Both tests… the Mono & Strep tests
were both Negative. They think she had a really bad virus, and probably while
she was sick her chiari symptoms were just enhanced some because of the virus.
A little disappointed, I guess I was hoping there was this glimmer of hope that
her symptoms were coming from something else. Deep down I knew the tests would
be negative, but that’s OK, we are going to just move forward.

She went
back to school today. Her class had an assignment as a family project, to put
together photos of her favorite memories, “firsts”, or the first 5 years of
life…. We decided to do “Kaylie’s First 5 Years”. While she was under the
weather last week, we worked on picking out photos and decorations for it. They
then had to link/connect all these photos together in some way. We decided to
make a big purple chiari ribbon to put them all on. It came out pretty cute and
she turned it in today.

We have had a lot of people inquire about making donations
to Kaylie. An account was opened for her.

Donations can be sent to:

BancFirst

Att: Stefanie Stromski

600 NW 5th Street

Moore, Ok. 73160

Stefanie Stromski is the wife of a fellow police officer
that Ben works with. She is also the Loan Administration Supervisor at
BancFirst. We were told any donations sent to BancFirst, to be attention to
Stefanie Stromski, noting that it is for Kaylie Barnes Benefit account. “Thank
you” to all the employees at BancFirst.

While I am saying “Thank You”… a very special one has to go
out to all the ladies that work at The Cutest Blog on the Block, for creating
the design aspect of this blog. I thought I was pretty creative, but my
goodness, they have really out done themselves, especially Becky! If you are
looking to start blogging, or even open a small business website… they are the
ladies to check out! You can visit their sites here or here!

One last note, we want all our friends and family NOT to
feel like you can’t talk to us. You can! If you have a question…. Ask! We just
don’t want anyone to feel they can’t talk to us about Kaylie, or Kaylie’s
condition, in fear it will upset us. We want to talk about it. We want the
awareness of Chiara to be out there. Again, we really appreciate everyone’s
support! XOXO

Saturday, April 21, 2012

I did not hear from the doctor Friday, so I am sure we will
hear something Monday. She had no fevers Friday or today. She is a lot more
active, so maybe she has gotten over whatever she had. She still of course has
had her typical chiari symptoms… her headaches, eye pain… what have you. I do
want to explain that her symptoms come and go… she can have them once a day,
more than once a day, all day, go for a few days without…you just never know,
and I believe she has come to learn to just deal with it all the best she can.
That doesn’t mean she doesn’t complain, because I feel like I hear it all the
time, and I just jot it all down in her notebook.

There has been a few questions, that keep getting asked, so
I thought I would answer them for everyone.

We have
been asked how much does Kaylie know about her condition. This is how I have
explained it to her. We told her that when she was born her skull bones were a
little small, and that her brain has grown so fast, and gotten bigger (because
she is so smart!) and it has run out of room, so it decided to grow downwards.
And this is why she has the headaches. We have asked her if she is tired of the
headaches, and she has said yes. We told her we will be seeing lots of special
doctors to help make them stop. She knows that we have this blog… to tell all
our friends and family about her special brain. And that’s it. We have not told
her about the possibilities of future surgery. I don’t think she needs to know
all that right now, or anytime soon. We will cross that bridge when it comes.

Many have
asked if Abby (our 7yr old) knows. She knows everything! We have not hidden
anything from her, she does know that Kay may need surgery one day, we just
don’t know when. But, we have not gone into details about the surgery. She is
concerned about Kay. She has asked questions mainly about how did she get this
and why. We explained to her that Kay was born this way, and we don’t know why.
I explained to her that things happen to people for no reason. That someone can
live a long time, be fine, then all of a sudden be sick or have an illness.
That they did nothing wrong… it just happens. But we will be fine, Kay will get
all the help she needs…. Everything will work out.

I have been
asked about school. Most of you know I have gone back to school for nursing. I
was taking 13 hours this semester. I dropped my A&P class, it was just too
much with everything that is going on with Kay. I had talked to my A&P
professor about it all… and he thought that was best for me at the time too. I
am already enrolled for the same class to retake it in the fall. It kind of
sucks… I had an A in it, was doing very well… loved it. But I will be able to
do it again!! I still have 9 hours of school I am taking… will finish those up
this semester. I am currently registered (have already paid for it) a class for
this summer… but I will probably cancel it, after getting the results from
Kay’s 2nd MRI. I may try to switch it to an online class… I just
haven’t decided yet. I am very fortunate that I have been a stay at home mom,
and that there is no hurry for my school. All this may set me back some, but it
will be fine. Kay & my family will always come first!

As soon as I hear from the doctors Monday… I will let
everyone know! The the BIG Neuro appointment Tuesday!!!

Thursday, April 19, 2012

So most of you know that Kay has been out of school all week. Last Sunday (the 15th) I thought she was starting some allergies, till she woke up Monday morning with a fever. So I decided to take her into her pediatrician's office. She had a left ear infection, and just a little pink right tonsil. So we were given a 5 day course of zithromax. All week she has ran a fever... at times as high as 103.2. We went back in today, because we are on our 4th dose of antibiotics... only one day left and she is still running fevers. Today her ears looked good! But her throat is full of puss pockets! They decide to run a strep culture and a mono test! They are kind of think the strep culture will be negative... because the zithromax would have taken care of it. And mono... could be possible, but it is rare in young children... usually mono is diagnosed in the teen years. In fact when I was in 9th grade, I had mono the whole semester of my freshman year... then we moved to Cali! LOL
The funny thing about Mono is.... symptoms are light sensitivity, neck pain, headaches... what symptoms does Kay have???? YES!!! All though her headaches and light sensitivity have been happening a lot longer than Mono would be, but.... I'm wishing for Mono.... because maybe some of her symptoms are from that, and not chiari. She still has chiari... but here is to hoping for Mono!!!

My hopes came crashing a little.. Kay was playing barbies... and came out telling me she is hearing a whistle in her ears, this has recently started happening... (her calling it a whistle). First time was at my parents house this past Saturday night. She had said, " hear that?... its a football whistle".... My dad was watching golf, no whistles in golf! Who knows... just another thing to start writing down! Kay has a notebook, I write all her headaches, ear pains, eye pains... etc. in. Still hoping for Mono... find out tomorrow or Monday!

Well, we see the neurologist April 24th. At this time Kaylie has only had a MRI of the brain. We know she has chiari, but we don't know if she has a syrinx in her spine, and how far her brain is protruding. The measurement really doesn't matter... b/c you can just have a small protrusion (5mm or less) and have symptoms and a syrinx. OR you can have a very large one, like 22mm... and not have any symptoms or a syrinx. You can even have a syrinx, and no symptoms! Each person is different. She needs to have a full spinal MRI (to look for a syrinx) and even a CINE MRI (measure spinal fluid flow)... there are a couple other helpful ones , even a CT. But I really want to rule out a syrinx! More info on the "syrinx... top of the blog under "What's Chiari?" talks about it.

After all the research, talking to other moms... and even top medical websites.... It is recommended to seek out a neurologist and neurosurgeon that specializes in chiari. When we say specialize, I mean has several cases, has done over 200 surgeries... 1000 would be best. There are thousands of neurologist and neurosurgeons in the United States alone.... but there are only a few that actually specialize in chiari. There are a ton... and I mean a lot, that are very interested in these cases, but do you want someone that is interested in your child unique illness... or do you want someone that knows how to care for it, and does it on a daily bases, and is involved with chiari research??? I don't want my child to be some one's fascinating case! So... who are these amazing doctors??? Well, not any in Oklahoma, that I have ever heard of. There is one in Chicago, Maryland, New York, Colorado, Virginia, Texas, and Ohio. In fact I have come across three adults that have had the decompression surgery that are from Oklahoma. One is from Chickasha, and the two others are from OKC... the one from Chickasha went to a Colorado neurosurgeon. And the two from OKC, went to The Chiari Institute (TCI). Now, you do need a good local neurologist that can work with the specialist you choose... because this is a condition with a life time of care and MRIs.

I have looked into three of them really well... two more so than one. The two that Ben and I are interested in getting opinions from are Dr. Rekate, from TCI in Great Neck, NY and Dr. Ben Carson, from John Hopkins in Maryland.

Our Plans.... we see our local neurologist on April 24th. Talk to her, establish a relationship with her. Have her script out a spinal MRI, and any other test she feels at the time needs to be done. If a syrinx comes back on the spinal MRI... Kaylie will need surgery sooner rather than later. We would then see the one or both doctors as soon as possible. If it comes back there is no syrinx, then we have time. We already have appointments set up this summer to see both doctors. We will then meet with both, listen to each of their opinions and treatment plans, then pick one to go with on continued care. For some crazy reason one of these two don't work out for us, I will then try to meet with Dr. David Frim from Chicago. But I think TCI or JH will work out! If our local neurologist does not run any of the test that are typically ran for chiari patients... No Worries... up north will take care of that.

Financially... We have been offered so much support, even financially. How our insurance works: we have a PPO In Network and Out of Network Plan. John Hopkins in Maryland we believe is in network... but Dr Carson may not be... its still being looked into. The Chiari Institute (TCI) ... only excepts out of network insurance. Our out of network plan is ...$500 deductible, 40% co-insurance (meaning we have to pay 40% of the charges after the $500). I have also talked to our insurance company, and supposedly there is a max out of pocket of $6,000... meaning possible only having to pay $6500 out of pocket. BUT..... and I stress this BUT.... it also all depends on the charges insurance companies pay out. For an example... if you had a procedure that the doctor charged $50,000... the insurance company may say they only allow $30,000 for that procedure... meaning we would then be responsible for 40% of the $30,000 and the other $20,000 that we still owe the doctor. Kind of crazy... YES!!! That's why insurance companies suck!!! TCI is looking into our insurance, and will be contacting me soon, on the information I need to know. After receiving it all, I will then be contacting our insurance company to verify all this again, and to get it all in writing.
Regardless of the cost and the insurance.... Our Daughter Will Get The BEST Care!!!! This is something that will not change in Ben & I's decision! I know we have family concerned about us choosing someone that is not in our insurance coverage.... But I don't think brain surgery on a child is where you start deciding money/cost is more important. So we would appreciate everyone's support with who we decide to go with. If we have to make payments on bills for the next 40 years... then that is what we will do!
We currently already have the funds ready for our first trip up north, for in the summer. If Kaylie ends up needing surgery... the plans are that Abigail & Mason will be staying with my parents in Oklahoma. Just Ben, I, and Kaylie will go up north, if she needs surgery. When that time comes... b/c she may need it this year... or 3 years from now, we will then start fundraising for her medical costs. I have been contacted from a few of Ben's fellow officer's wives in regards to fundraising for Kaylie... Thank you ladies, you don't know how much that means to us! When the time comes... things will be put together. We will also contact the Ronald McDonald House, they have a house near TCI, and we have heard they only charge $25 a night to stay there... its a house, with kitchen and everything.
I'm not worried, about the money part... you think one would be... but I'm more concerned about Kaylie's care. It will all work out!

In our first post I told everyone that we would occasionally have family member's thoughts on all this.... mainly mine. I love to write! I think it is a great way to let out all your stresses. So this whole blog thing, is perfect for me.

I have to apologize to friends and family... and even our pediatrician, for times that you may have called.... and I have broken down. I have good days and bad days... and I am not even the one that has this condition! I love that little girl so much!!! She means the world to me, just as my other two .. Abigail & Mason do as well. It kills me, that she will have to deal with this the rest of her life. And that there is no cure for it. I have gone through shock, denial, anger, depression... and I am hoping I am coming around to my strong point for her. I know I am being strong for her, because of all the research, talking to doctors for her, and being on top of all this to get her the best care...But I don't feel strong. I feel like I hit a low all the time. I'm tired of crying. I'm tired of seeing her do something, and I get upset because I know its part of this illness, and there is nothing I can do for her. I feel horrible inside at all the times I have gotten on to her about not being able to find things, or forgetting where she put something, or forgetting what she is suppose to be doing.... all along its this chiari thing, we never knew about.
Everyone that knows me, knows that when I have an idea, or decide to do something... I go full throttle. I am a proactive type of person. I think I am doing that for her... but why do I feel like I am not?? I want to "feel" that I am, and not be sad anymore. A new chiari friend told me, give it time.... one day you will wake up... and you will realize it is just part of your life, and that it will be part of your everyday regular routine.... and you will not think twice of it being any different.
So in time.... right?

This past month or so, has been nothing but an emotional roller coaster! We really appreciate every one's concerns, support, prayers and thoughts toward us and especially for Kaylie. Many of you are having a hard time understanding what's going on, or are confused about Kaylie’s situation. So here is a load of info, if your interested! We have created this blog to keep family, friends and new friends to come, updated on Kaylie's condition and the awareness that is needed to understand Chiari 1 Malformation. We have had so many inquire, "Are they sure?", "Could it really be this...", It sound a lot like this illness/mental condition/disease". Yes!, No! & No! Yes, they know for sure she has it... it was on an MRI. Chiari is literally a malformation of the brain. Malformation means: irregular, anomalous, abnormal, or faulty formation or structure. It is a physical condition, that is causing her symptoms. She was most likely born this way. Meaning that when she was born her skull bones were born a little to small, and as she has grown these five years, her brain has caught up to her skull (b/c your skull grows faster than your brain) and it has run out of room, so it has started to protrude downwards in the foramen magnum (the hole your spinal cord goes down). I am not going to go into any more explanation of it... at the top of this blog under: "About Kaylie" and/or "What is Chiari?" you can read more about it all and that info will always be on here.

Like I said before, this blog is to keep all up to date on her. We will probably be talking about how the other four members of our family are handling this, time to time. Me (Amber, Kaylie's mom) will probably a lot!

I hope you find this blog useful... maybe interesting, and spread it around! More people need to be aware of this invisible illness. Kaylie looks "perfect" on the outside... and believe me, she is to me... in every way, but she has a serious condition. So, Follow us, Comment to us, Facebook us, Tweet us, Email us.... spread the word!

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About Me

I am the owner & writer of this blog. I am also the mother of Kaylie, Mason and Abby. This is a blog of our personal story dealing with Chiari, and related conditions. This is not to substitute for medical advice, please see a physician for that... this is just our story and our experiences.

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